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6 Do not resuscitate decisions in pediatric patients
The Case
A 4-year-old boy with metastatic neuroblastoma undergoes stem cell transplantation following intensive chemotherapy and radiation. 17 days post-transplant, with the success of anti-cancer treatment and stem cell rescue unclear, he develops an acute bowel obstruction. His parents feel that, after many months of therapy, especially over the last few weeks, their son should not have to endure “heroic” treatment. They do not want him to have cardiopulmonary resuscitation (CPR) and the oncologists have agreed to a “do not resuscitate” (DNR) order, given the boy’s overall poor prognosis. The parents would like him to have palliative surgery to relieve the bowel obstruction. The anesthesiologists and surgeons request suspension of the DNR order for the surgery. The parents do not understand why it is acceptable to forgo resuscitation on the oncology unit, but not in the operating room.
Attempts to resuscitate a person from an apparently “lifeless” state date back to at least biblical times:
When Elisha came into the house, he saw the child lying dead on his bed. So he went in and closed the door on the two of them, and prayed to the Lord. Then he got up on the bed and lay upon the child, putting his mouth upon his mouth, his eyes upon his eyes, and his hands upon his hands; and while he lay bent over him, the flesh of the child became warm.(2 Kings 4:32–34)1
In 1878, Boehm described closed chest cardiac massage in cats, the basis for current CPR. The first successful resuscitation in humans using CPR, reported in 1960, involved five patients who experienced in-hospital cardiac arrests.2
The use of CPR spread and in 1966 the National Academy of Sciences’ National Research Council recommended all health care providers obtain CPR training. CPR became a nearly ubiquitous final procedure for all hospitalized patients experiencing cardiopulmonary arrest, regardless of circumstances. Later, healthcare providers questioned the indiscriminate use of CPR, particularly with terminally ill patients for whom resuscitations seemed to provide no benefit and who might experience suffering related to CPR. In some circumstances, professionals began to decide, albeit arbitrarily and without input from patients or their loved ones, who should or should not have CPR. Language such as “show code,” “Hollywood code,” or “slow code” emerged to describe sham resuscitations when healthcare providers chose not to make serious efforts to revive patients.
In 1974, the American Medical Association (AMA) described CPR as a procedure meant to prevent sudden, unexpected death that has no valid use in patients with terminal, irreversible illnesses. They stated, “Resuscitation in these circumstances may represent a positive violation of an individual’s right to die with dignity,” and proposed that actual orders be written in the patient’s chart when a physician determines that CPR is not indicated.3 In response, hospitals developed specific DNR order policies.
Arguments about the patients’ right to self-determination ensued. Some felt practitioners should assume that all patients prefer resuscitation unless they or their valid surrogates have clearly stated otherwise. Others argued for only offering CPR when “medically indicated.” A 1983 report of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral established a standard whereby consent for CPR was presumed unless specifically withdrawn following discussion between the patient or surrogate and the involved physicians.4
Terminology
The original term, DNR, persists at many institutions. Some institutions use “DNAR” (“do not attempt resuscitation”), arguing it better recognizes that CPR often does not succeed. Recently, some have advocated using “AND” (allow natural death) noting that it focuses attention on improving the dying process, rather than on withdrawing therapies.
Simple DNR orders do not convey information about a patient’s goals for care and views about life-prolonging technology. Resuscitation goals do not always fit into a “yes” or “no” response. Patients may prefer to make specific decisions about multiple therapies, including intubation, vasoactive medication, defibrillation, chest compression, antibiotics, and laboratory testing. A patient might want intubation in the event of respiratory decompensation, for example, but prefer not to undergo chest compression or defibrillation for cardiac arrest. Which interventions make sense depends on patient/surrogate goals and the specifics of the clinical situation.
DNR orders in adults vs. children
In the US competent adults have the legal right to refuse unwanted medical therapies, provided they understand the consequences of refusal. A competent adult can refuse therapies based on: (1) religious or moral views, (2) views about what constitutes a good quality of life, or (3) a determination that a particular therapy is inappropriate for medical or other reasons. Often adults lack decision-making capacity at the time when a decision is required. Anticipating such a possibility, some adults have written or oral instructions, known as “advance directives,” that communicate their wishes should they lose decisional capacity. Alternatively, adults may identify a decision-maker and confer on them a “durable power of attorney for healthcare decisions” for situations when the patient cannot make or communicate their own decisions about care. The law generally expects alternative decision-makers to choose based on what the patient would have wanted. This is called substituted judgment.
Pediatric patients often lack the capacity to make medical decisions, either because of their neurodevelopmental status or their medical conditions. Principles of law and ethics rely on parents to make medical decisions on behalf of their children, based on the best interest of the child.5 The best interest standard requires that the decision-maker determine the net benefit for the patient of each option, and the appropriate course of action is the one with the greatest overall patient benefit. Older children or adolescents have some capacity to make, or assist in making medical decisions. The American Academy of Pediatrics recommends that the pediatric patients contribute to decisions to the extent of their ability.6 (More in-depth discussions of pediatric informed consent and the rights of minors can be found in Chapter 5)
Related posts:
Informed consent and the pediatric patient
Communitarian values in medical decision-making: Native Americans
Ethical considerations in interventional pain management
Conflicts of interest in research funding
Physician conscientious objection in anesthesiology practice
Opioid therapy in addicted patients: background and perspective from the US
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